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Category Archives: don’t get me started

if you were to go to the MS society right now, you would find that their website spouts some drivel about how having MS does not require any sort of special diet other than the same balanced “healthy” diet that is recommended to the general public. if you then brought up a dairy and gluten free diet to a top MS specialist and researcher (such as the doctor i saw at UCSF for a second opinion) you would probably hear the same answer i did–that no special diet has been shown through research to be of benefit to a person with MS. and this is true, but its only half the truth. what the doctor is leaving out is that no one is bothering to look into it from the medical world, which says nothing about the potential efficacy of such a thing. it simply means that at this point there is a lack of interest. and why would they be interested? who would fund them? teva neuroscience?

think about it: MS medications are costly and patented. there will never be a generic form of copaxone. it will never cost under $2000 a month. why would it? they have us cornered. we have no other choice but to take what they offer and for the price they offer it or take nothing at all. the docs back them up by telling us, the patients in our weakest moment that this is all that there is to offer us. that this is the only piece of hope out there. of course they do.

you can’t patent food, my friends.***

we have choice at the supermarket and we can grow our own food. insurance companies, pharmaceutical companies, and your doctor will never benefit from you having these choices. so why would they encourage you to make them? why would they disrupt the power dynamic they are profiting from?

the other thing that they don’t tell you is that there is a wealth of data–both researched and anecdotal that supports diet as a factor in autoimmune disease. and there are people (like Dr. Swank) who have devoted their lives to getting this information to those suffering with MS.

the medications that our neurologists have told us we should be taking all have side effects. for me, copaxone has caused new allergies to surface. for other medications, there can be a negative effect on liver function, flu symptoms, and or other side effects. the treatment for these is usually more trips to the doctor or more medication. thats a win-win for your doc and pharmaceutical companies.

i get asked frequently by people what my reason is for choosing to be dairy and gluten free. its simple: medications are expensive and they aren’t all that effective. they also have side effects. to be fair, changing my diet has had side effects too: i lost weight, my blood pressure went down, my complexion cleared up, and i am eating way more fruits and vegetables than i ever have in my whole life. even if it doesn’t help with my MS, this diet is a win-win for me.

when i was first diagnosed, i was offered a lot of different medications. valium, flexeril, neurontin, etc. each one of these has serious side effects including physical dependence and NONE of them will, without a shred of a doubt keep me from progressing. there isn’t even a guarantee it will make me feel better. but most doctors would be more apt to suggest taking any one or all three of these medications over recommending a dairy and gluten free diet. something is wrong with this picture, don’t you think?

while i don’t think that diet is enough to keep this disease from progressing, i think that we have a right to know the whole truth about it. MS medications are not the holy grail of treatment. there is no magic pill to make this all go away. but there are pieces we can add together to hopefully create a better outcome for ourselves.

“there is no money in healthy people or dead people. the money is in sick people”

–bill maher

***except that sadly, in our times monsanto would LOVE to see just that happen. this is why organic, local food is so important! in the short term, conventional foods might save you a buck or two (and don’t get me wrong, i’m not on a soap box here and i do still eat at non-organic restaurants and buy some non-organic foods), but buying GMO foods (and nearly all conventional food is GMO) is, IMO and as my grandmother would say “penny wise and dollar foolish.” consider the larger picture, folks.

whoever says MS doesn’t define them is a liar. MS affects every part of my life! every part. even the private ones, the parts i work very hard to compensate for. it affects how often i see my friends, whether my house is clean, where and how often i shop for groceries, and what job i will take in the future. it is something that i have to consider in every aspect of my life. now tell me, how does that not define me? how does that not shape the decisions i make–the decisions that form patterns and habits and roles? the decisions that become actions which are consciously executed by my body and mind and are visible and observable by those around me. how is that not then, a definition of what i do and therefore, who i am?

i get really tired of hearing such ridiculous mantras from people. MS does define us! let’s just learn to be ok with that. let’s just learn how to grow in this definition instead of wasting our time trying to convince ourselves that it doesn’t exist.